This is part two to Noisy – Part One. I have been struggling with how to start part two. So I guess I just jump in.
After the diagnosis, and the introduction of medication, things with her were wonderful. She was a different child. I could talk to her, actually sit down and read a book to her and she be able to follow along. Her writing became neater, coloring was 100% better and she was able to stop the erratic behavior. Her grades went from 40s and 60s up to 90s and 100s. Her conduct at school and home was excellent. No more trips to the office, no more problems at home. She became more wonderful and delightful to be around.
Not only did this help her, but it helped me to be able to relax a bit more. By that I mean I wasn’t “on guard” where ever we went. Before, when we would went places, I had to be constantly on guard. Never able to actually think about anything other than keeping her from running away. Into traffic at the grocery store, pulling things off the shelf, hiding and just running all over the place. I could actually give her a piggy back ride in the stores because I wanted to. I used to do this just so I could keep up with where she was. Let me tell you, with 5 year old piggybacked, you have a hard time getting things off of shelves.
Needless to say the medication was wonderful. The doc had prescribed 5 mg of methylphenidate once a day. After about a week, we increased it to twice a day. Along with the excellent behavior during the day, came the no eating. No sleeping. No matter what I fed her, she wouldn’t eat. This was a child that ate everything before. Was always hungry. I never had to worry, because she ate what you gave her. And all of a sudden it stopped. So I started adding carnation instant breakfast to her milk. Milk was about all she ever wanted. And is still that way today.
The sleeping, the sleeping. What can I say. She had trouble. Couldn’t seem to figure out to to make this happen. So, instead of reading to them in the living room after school. I decided to start reading to them before bed. It never really worked well and I never found a solution that worked every night. I made sure she had warm baths before bed, tried to keep chaos down around that time. Bed time is at 8:30. Always has been. Some nights are better than others, and some are terrors. Sometimes she will fall asleep quickly and sometimes it takes till 10:00. Nothing I try works all that great, but we work at it every night.
Now, the meds. Oh the wonderful meds. Well, they stopped working about 6 months into the program. So we changed to something else. I forgot what. But it worked for about 6 more months, then we changed again. They worked for about 3 months. And since then, no matter what she takes, it works for about 3 months and that is it. I can always tell when they are on the downhill, because her appetite comes back, and the grades go down.
I try to keep an eye on her grades and keep in touch with her teachers. That way before they start getting too bad, we are able to get to the doc and try something else. I should also mention, that I don’t rely on the meds to do all the work. I or we, “the family” work at it together. I have changed the way I deal with her and it really helps. She used to be punished for her behavior the way any child would. Taking away things for a period of time, timeouts, and some times swats.
Now before you go and criticize me for the swats, I don’t mean “beat”. I mean swats. Anyway, we don’t do that anymore, it didn’t work anyway. I have learned to be more patient all around. Not just with her, but her brother and everyone else.
I take more time for her and less time for me. I spend more quality time with her and her brother together and make a habit of recognizing bad behavior and pointing it out. Redirecting is a great way to stop behavior before it starts. But you have to be on your toes and catch things before they happen.
Example. She is playing with some toys, Nosey comes in and try’s to get her to play something he wants to play. She will scream, “NO”, and if I don’t step in, it will escalate to a fight. I know this happens with all siblings, but this will get physical because she will attack him. Yes attack him. Meds or no meds.
Something else, I try to make sure she doesn’t get bored. Sometimes if I am busy, and she is getting bored or the meds are starting to wear off, she will provoke her brother into a fight. I know I know this happens with all kids, I just try to keep order by keeping them busy. And sometimes separated.
Now back to the meds. She has been taking meds since 2005. Changing frequently from methylphinadate, to concerta, to adderall. About every 2-3 months now, we have to try something different from dosage, to change all together. The last time we went to the doctor was Feb 28 th. Before that was sometime in November. This last prescript was Focalin. I didn’t like it at first because it seemed to wig her out. But after about a week she was back on track.
Beginning of Feb, things started to decline again, and so we did alot of redirecting and trying to work things out our selves until the next appointment. We did pretty good in the early hours, but later in the evenings has been a test of wills. I have been exhausted the past month and having problems of my own has just made me a nervous wreck. But we have survived.
On Thursday, Feb 28th, we went to the doc. We decided to try the “Patch”. Since both kiddos would be going to Grandparents for the weekend, I decided to wait till Monday, yesterday, to start with the patch. I know the doc told me to start with one and if that didn’t help do two. I told her teacher of the change and to call me if she seemed to have any problems. I do this every time we switch. Well yesterday, I must not have gotten the dang thing on right, because around noon the teacher called.
I kind of thought maybe that she would take it off, or really go nuts because of the thing stuck to her hip. So I expected the “call”. Teacher said, that she wasn’t having problems with it being there much. Some discomfort, ok, that was to be expected. But she said the problem was erratic. Oh dear. One minute she was up on the ceiling. The next she was wonderful. And there was no gradual change, it was instant. One minute she was doing great, the next she was lost. Noisy I mean, not the teacher.
So I decided to go ahead with the two patches the next day. Which would have been today, but I overslept. You are supposed to apply the dang thing an hour and a half before you need it to work, which meant I should have gotten up at 5:30 to apply it, but didn’t wake up until 6:30. So I didn’t do it. I ended up giving her a focalin instead. Bad Mother, Bad.
I wrote her teacher a note and told her what I had done, and I expect a phone call around noon again today. For tomorrow, I will not oversleep, I will set the alarm and put the thing under my pillow where I will hear it. I am just hoping that I didn’t cause severe brain damage to my child because of my own stupidity. Had I been thinking clearly, I would have gone ahead and applied it anyway at 6:30. But I was in the morning fog. Ohh being a mother is sooo harrrddd. You never know exactly what to do.
Sum this all up and the meds when they work are great. My child is now an A and B child. She is “here” with me. I can talk to her like a mother should be able to talk to her child. She has not lost her personality, but gained a voice. She still sings all the time, and is my sweet little Katie Pea. I know that meds don’t work forever, and they aren’t for everyone. If she wasn’t such a severe case, I would try the herbal remedies, but I wouldn’t trade the experimentation for what we have now. The older she gets, the more she can tell me how she feels, and can help me help her.
She now tells me when she feels like she is getting out of control. This has to be one of the scariest things a parent goes through. Autism, Adhd, and other disorders are so scary, you never know what is going to happen next. Or what you are doing. It is day by day, hour by hour.
I love being a parent, and I am learning more about myself in the process. Just hang in there. Prepare yourself for the rough days, but enjoy the good ones.
So there is Part Two. I will keep you all updated on the patch, just don’t send me emails about what a horrible mother I am…. Because, I am trying.
